“Time goes so fast – try not to let CF consume you”: Bryony’s story

Our little whirlwind

Oliver is the happiest, cheekiest and funniest little whirlwind. He is so loving and has such an interest in the world around him, asking constant questions and taking everything in. He's a real outdoor boy and loves playing in the park, feeding the ducks, going on bear hunts, spending time digging at the beach and cutting the grass with his lawn mower. 

He is gentle and kind to other children and animals and loves being around familiar people. He's so sweet and such a little old man; some of the sayings he comes out with really make us smile. 

Oliver’s CF diagnosis

We were incredibly shocked to receive his CF diagnosis. He was 3.5 weeks old and I think deep down we knew something wasn't right. His weight gain was minimal, if at all. Despite being fed every 90 minutes day and night. It just didn't make sense. But never in a million years would CF have crossed our minds. We had no family history that we knew of at the time and neither of us knew very much about CF.  

It took a long time to process that our parenting journey would be very different to the one we had always pictured and that our time with him would be unknown. 

Following the diagnosis, we spent the weekend on Google looking at everything we could around CF. We also looked at lots of stories about children who were taking modulators, and it gave us hope that at 2-years-old he would be able to benefit from these treatments. At our first appointment with our consultant, we mentioned the modulators and said presumably he's D508 as that's the most common gene. Our consultant looked so sad and had to tell us he wasn't, and one of his genes he had never even heard of. It was another hard blow after a long weekend trying so hard be positive. 

We won’t let CF define Oliver

We try to make sure his childhood is as normal as can be with added precautions. Our brains are constantly in risk assessment mode, but he doesn't know that. He sees friends, goes to nursery, plays outside, goes to indoor activities like soft play and the trampoline park. There's very little he misses out on. The few exceptions we have like hot tubs and butterfly houses don't seem a huge deal at the moment. Our friends and family are so supportive and follow our lead when we're out so he never feels like he's missing out. 

We always make sure to do his PEP first thing in the morning and nebuliser last thing at night. The rest of the day is ours for fun, socialising and making memories. He's so active and barely sits still so he's doing physio a lot of the day with very little encouragement. 

We've always taught him from a young age the proper names for things like Creon, antibiotics, nebuliser and PEP. We talk about what we do to protect his lungs and make him grow big and strong. He's amazing with his Creon and will come home from nursery telling me 'I had Creon at nursery because I ate all my dinner'. They always comment on how well he takes it. He knows no different. 

We go to clinics every eight weeks which is always a long and tiring day for him. He gets cooped up in a small room for two to three hours when all he wants to do is roam free. We try to do something fun before or after, especially if he has to have blood tests as they're not nice for him. No amount of bubbles, iPads and cartoons make that part any easier for a 3-year-old. 

Our hopes for the future

Our hope is that Oliver will have a long, healthy and extremely happy life despite his CF. He deserves that and we work hard daily to strike the balance between keeping him safe and healthy, and letting him live his best toddler life! 

My hope for CF research is that someone extremely clever can crack gene editing and find a cure for him and all the other amazing, strong individuals with CF. But my second hope is that the research carries on long enough to get there. Funding is being cut in countries like America and the more we see of people thriving on modulators the less important those who don’t benefit seem. 

We already feel so behind and left in the dark when there's so many amazing results from modulator use. It's amazing for them, but a real sting for us families who don't have that chance currently.

Our ‘extra special salty boys’

When Oliver was first diagnosed, we used Cystic Fibrosis Trust’s website for a lot of resources. Particularly sharing with our friends and family so we weren't answering questions early on, that we really didn't know the answers to. We also used the resources to prepare him for starting nursery and will be refreshing our memories this Autumn when we have to apply for his school place. 

I also attended the Mamas and Papas meet up in 2024 in London held by the Trust and had the opportunity to meet with the amazing mums that I speak to every day in life! We have a WhatsApp group called 'Extra special salty boys' and it's honestly a lifeline!

A love that is unlimited

My advice to other parents is find your tribe! You don't need a huge group, just a few CF parents who you can talk to. Someone to message and say: How was clinic? Have you seen this research article? Is Oliver feeling better? 

Try not to look on Google or Facebook groups for every question you have. Sometimes you have to work out where your boundaries and comfort levels are. Everyone does things differently so don't feel like you have to do the same as others. As time goes on your comfort levels will feel more clear and if they're not the same as other parents, that's ok! 

Ollie's diagnosis was one of the hardest moments of our lives, but my advice would be to try and not let it ruin the newborn days. Time honestly goes so fast, don't let it consume you. You have a gorgeous, perfect baby who loves you with their entire body and soul. Soak it all up!

For us, a life unlimited means no restrictions on his future. To travel, do any job you desire, have a family of your own, feel safe exploring and trying new things, feel loved by everyone around you, plan for the future that you want and deserve. And know the love that we have had for you since day one has been unlimited. 

We've put together a booklet called Cystic fibrosis diagnosis and your baby – A guide for families, which is filled with helpful information to support you through these early days following diagnosis.

Download the booklet